Rheumatoid Arthritis and Relationships
Let's chat and discuss relationships. What's one (or more things) you wish people knew, and what's something you wish people understood more of in regards to RA, and what you deal with daily? Feel free to share your experiences with all types of relationships in your life i.e. medical, platonic, romantic. What you learned and tips to help others navigating this for the first time. But I feel we are always constantly learning, growing and healing in this area. Sometimes chronic illness forces you to do it faster or at a pace you may not want and like.
Most people seem to think that RA is just a different type of arthritis - they do not realize it is an auto-immune disease. Helping your partner/best friend/family members understand exactly what RA is and does, helps a whole huge lot.
Someone made a joke about the side-effects being worse than the disease after seeing a commercial for an RA drug, and, of course kind of laughing about it -- but it provided an opportunity for me to happily, (nicely, kindly..), let them know that RA will kill me by attacking my lungs and heart if I don't get it under control, made them see that it is actually a very serious disease. It's not just a license for me to complain about every ache and pain I have!
Education is key in most things.
Hi
. Sometimes life does present that opportunity to educate on a different level. My wife, Kelly Mack (a contributor here), was diagnosed at age two, 45 years ago - before modern treatments, with the damage to show for it. She has used a wheelchair since childhood, so her condition has basically always been visible. She wrote this article on how to stick out (https://rheumatoidarthritis.net/living/stick), noting that by being out and about, living her life and being visible, she can educate people on RA and disability issues because the opportunities will come. Best, Richard (Team Member)
It's simple, I don't talk about my chronic pain and RA related issues. That includes my spouse, family, friends or people I run into at the grocery store. No one wants to hear about my suffering and when I have discussed these issues the conversation unravels into dehumanizing comments. It's a lonely road.
Hi
. When I read your post I thought of this older (but still very relevant) article from our contributor Leslie simply titled "Educating People is Exhausting:" https://rheumatoidarthritis.net/living/educating-people-exhausting. No one should feel obligated to have these conversations - it is a personal choice. Please know that people here understand and you are always welcome to discuss these issues here (or even vent a little 😀 ). Best, Richard (Team Member)
Interesting you should say that. My RA stops me doing a lot of things - but my husband doesn't want to know how or why. He's actually said he gets fed up with me "whingeing." I think he might be a bit more sympathetic if he understood what RA actually is - and what it can do - but he doesn't want to know. He nursed his first wife through cancer for twelve years till she died, and I think he might be afraid it could happen again. I understand that - but, as you say, it's a lonely road. . .
Hi
I wish I had an easy answer on how to get your husband to learn more about RA because I suspect you may be correct about the impact it would have. I happen to be the husband of someone with RA (my wife, Kelly Mack, is a contributor here). Before I met Kelly, I knew very little little about RA and I come from a research background (including a short stint at an NIH facility), so it is not surprising that he doesn't understand. It is the not wanting to that is the issue. If you could get him to look at something this article from our patient leader Lynn Marie is one of the best explanations for family and friends: https://rheumatoidarthritis.net/living/disease-explanation. Also, if you could ever get your husband to go with you to a rheumatologist appointment with you that can be a very informative experience (especially if you throw in some questions for the doctor about all of the things that can be impacted by RA, including organs). Please know that people here do understand and, while it is not the same as that personal interaction, this community is here for you. Best, Richard (Team Member)
I can honestly say that my husband actually told me he resents me for having this disease!! He tells me I am always in pain and that I can never remember anything and that our house is always a mess and filthy because I can never do anything because I am always in pain so I quit talking to him or my boys about how I am feeling and started medicating myself more so I just fall asleep earlier each night so I can avoid conflict and stop disappointing them
, I am so sorry. I am sorry your husband resents you for something out of your control. You didn't ask for RA, nor did you do anything to cause it. Would he resent someone for being visually or hearing impaired? Would he resent someone with intellectual disabilities? I don't know. Maybe he would? But, it's unfair towards you.
You deserve support and understanding and I am sorry you are not getting it at home. Please know you're welcome here anytime you need a place where people get it and understand what you are going through.
Gentle Hugs, Erin, Team Member.I'm so sorry to hear this. I know it's not an easy thing to deal with, and many, even our closest ones can become impatient in understanding what we are going through. I feel many of us including myself can relate to people in our lives feeling some type of way about our disease. Yet we are the ones living with it, so it's important they try to put themselves in our shoes or provide a safe space for us to express our thoughts. Just know we as a community are here for you and please know you're doing the best you can. Perhaps you can try to chat with them and see if tasks can be split up or someone can take the load when you're not feeling well? Sending good vibes and hugs your way.
-Effie, team member
